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What happens after treatment for Kaposi sarcoma?

For some people with Kaposi sarcoma (KS), treatment may completely remove or destroy the cancer. Completing treatment can be both stressful and exciting. You will be relieved to finish treatment, yet it is hard not to worry about cancer coming back. (When cancer returns, it is called recurrence.) This is a very real concern for those who have KS, since treatments often do not cure the disease completely.

For many people with KS, the cancer never goes away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. See When Cancer Doesn’t Go Away for more about this.

Follow-up care

Even if your treatment ends, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you are having and may do exams and order lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you’ve noticed and any questions or concerns you have.

After your cancer treatment is finished, you will probably need to still see your cancer doctor for many years. Talk with your doctor about what kind of follow-up schedule you can expect.

It is important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy:

A copy of your pathology report(s) from any biopsies or surgeries

Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.

If you had surgery, a copy of your operative report

If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home

If you were treated with radiation, a copy of the treatment summary

If you had drug treatment (including chemotherapy, antiviral drugs, and/or biologic therapy), a list of the drugs, drug doses, and when you took them